I started my morning reading a beautiful post from Our Diabetic Life in 3D titled ” Diabetes is a Sailboat”. http://www.ourdiabeticlife.com/2011/07/diabetes-is-sailboat.html It’s a story about how having a child diagnosed with diabetes is like putting your child in a sailboat and watching him set sail alone on the high seas. Meri is a fantabulous writer and mother of 4 boys, 3 of them have Type 1 Diabetes.
And after I cried through Meri’s post, , I visited my facebook page….one of my “friends” Melinda had posted a link to a beautiful youtube video about one family’s struggle to set a young whale free from fishing nets.
As I watched that video, http://www.youtube.com/watch?v=EBYPlcSD490&feature=share
I couldn’t help but relate Meri’s blog and the Fishbach family’s challenge of freeing the whale, to the challenge that all the men, women and children who have diabetes also struggle with. Just as this whale was trapped in the fishing net, they are tethered to diabetes. As new and better treatments are discovered, it cuts away at the net and allows them a small taste of what it’s like to live life without diabetes, but until the entire net is removed they will struggle to manage their disease and will not be truly free.
I hope and pray that I will live to see the day when my grandson and all of you, who so bravely battle day in and day out, can live without needles and pumps and tubing and meters and testing blood sugars and highs and lows and complications from this crappy disease and can breach and tail slap and fin slap, (or dance and sing and shout, if you prefer) just as the whale did when it was freed!
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As most of you know..I am a grandmother and a Type 3 (once removed)! That is..I do not have diabetes, my children do not have diabetes, it is my oldest grandson that was diagnosed with Type 1 Diabetes!
As any of my friends and family will tell you, I am the definition of a Mother Hen! Not necessarily a good thing, but none-the-less it is a part of who I am!! “D” showed up 7 years ago and threatened a member of my family.. “D” did not just come in and steal a part of my grandson (his pancreas), it took a piece of all of us and forever changed our family! I HAD TO do what I could to make “D” give it back!
I volunteered with JDRF (Juvenile Diabetes Research Foundation) and started out just participating in the Walk to Cure Diabetes every year. Then I became a JDRF Advocate and periodically wrote to my congressman asking him to please do what he could to make sure that diabetes research is funded so that a cure can be found as soon as possible. And 2 years ago I was asked to be the Advocacy Leader. Saying “no” is a very hard thing for me to say and thank goodness. Being the JDRF Advocacy Leader I was invited to attend their Government Day in Washington DC.
And so it began….
At this year’s Government Day, I was introduced to the Diabetes Online Community. Something I didn’t even know existed! Listening to all of those young men and women talk about the DOC and the support it gives to its members , I knew I had to learn more. I think it kind of started as a joke, but somehow this old gramma (thanks to Scott and Kerri) left DC that week with my own blog site and twitter account!
The DOC not only offers support to each other that is beyond description, it is so much more. It is, in almost every sense of the word, FAMILY! The members of the DOC laugh together, they cry together, they educate each other, they all love unicorns and cupcakes, they advocate, they vent their frustrations without being judged, they are there for each other 24/7, they encourage each other during tough times and they celebrate the victories!
They live their lives, day in and day out, 24/7 with no vacations from “D” and shout “YOU CAN DO THIS!” with pride! Each and every one of you living with diabetes are my heroes!
I am so grateful to George http://ninjabetic.squarespace.com
for inviting me to a D meet-up last Saturday. He is going to be speaking to some of our advocates next month about the DOC and I am so excited!
I got to see Scott http://scottsdiabetes.com/
And I got to meet Jenny and her husband http://web.me.com/wyldceltic1
and last but not least…..
Brad Slaight aka “Meter Boy” http://www.captainglucoseandmeterboy.com/
Thank you all for your courage, commitment and dedication to the DOC and for making me feel so welcome at your table!
Last week I attended a JDRF Corporate Breakfast hosted by Rob Savage, the COO of Taco Bell and father of a son with Type 1 Diabetes.
Rob is the corporate chair for our Orange County JDRF’s Walk to Cure Diabetes coming up in November. We had a wonderful buffet breakfast. Rob and several others spoke about how diabetes has affected their lives. One of our JDRF mom’s read a moving poem by fellow blogger, Gary Hempleman. We were then updated on the progress of some of the JDRF funded research going on, and in conclusion, they played a great video that shares a little about what it’s like living with diabetes. It seemed to make an impression on most all of the people in the room.
The event lasted less than an hour and was a big success. Through this breakfast JDRF was able to engage new organizations and corporations to join in our quest to find better treatments for diabetes and a CURE!
Our local JDRF chapter just released that video on youtube. Thought you all might like to view it as well. http://bit.ly/kr9Ukk
Since I was introduced to the DOC a little over a month ago, I’ve not found many (in fact, I haven’t come across any)blogs by grandparents of anyone with diabetes of any type.
That means that every post I read from each and every blogger is coming from a different perspective than mine.
I do not have of diabetes. I am not a parent of a child or adult with diabetes. I am not a spouse of a person with diabetes. I am not in the medical field. But I am the grandmother of a wonderful young man with Type 1 Diabetes and I desperately want to do what I can to help make his life easier until a cure is found! I want to understand how his body works without a useful pancreas and I want an insight to what he might be feeling, but not sharing with us. I want to make sure that what I say and do, will be a benefit, not add to his struggles that come with living with this disease that never lets you let your guard down or let’s you take a day off!
I have learned that sometimes, no matter how hard you try, or what you do, your bg #’s are not going to cooperate!
I have learned that what works for great bg #’s today might not (and probably won’t) work tomorrow.
I have learned that there is no good type of diabetes.
I have learned that many in the medical field have a lot to learn about diabetes!
I have been reminded that our children with diabetes, grow up to be adults with diabetes.
I have learned that the Diabetes Online Community (DOC) is made up of some very incredible men and women willing to share many of their struggles and innermost thoughts about diabetes and living with it. They do this so that no one suffering with diabetes, of any type, will ever have to feel alone, they do this to enlighten those of us who do not have diabetes and along the way, they have made friendships that will last their lifetimes! They do this day in and day out, through bad times and through good times.
I have learned that what you say can stay with someone a lifetime.
I have learned that effects from a single high or one low can impact your body for days…not just hours.
I have learned the incredible power of social media.
I have learned about the band, Blunt Lancet!
and the power of a cupcake!!
Thank you all so very much for making this grandma feel a part of this most inspiring community!!!
You are all my HEROS!
Saturday evening, March 12, 2011
After freshening up I headed back downstairs to the hotel foyer for a reception to meet all the other advocates that have come from all over the United States. It is so fantastic that all 50 states, including Alaska and Hawaii are represented. There were many of us who were here last year, there were many new advocates that were here for the first time and there were also quite a few “boomerangs” that had been active in previous years, took a break and are now back and ready to hit the hill again!!
It is so inspiring to me to see over 150 people, from so many different regions of the US and so many different walks of life, come together in one place with such passion. That all of them have the same goal… to advocate on behalf of so many living with Type 1 Diabetes and ultimately to find a Cure!
Dinner was served in the South Ballroom, and was followed by Vice President of Government Relations, Cynthia Rice kicking off Saturday night’s awards program. She and Government Relations Committee Chair, Rik Kirkland introduced last year’s Volunteer Chair of Grassroots Advocacy, Lorraine Stiehl (who, by the way, is absolutely amazing!) and she presented to us the NEW Volunteer Chair, Camille Nash . It was a wonderful evening celebrating the successes of the past year, and announcing of this years award winners.
- Judy Krtek of the Kansas City Chapter received the Above and Beyond Award
- Laurie DeSchyver from the LA Chapter won the JDRF Messenger Award
- Michelle Freedman from the Oregon/SW WA Chapter received the Stand and Deliver Award
- Jeanne Mansfield (that’s me!!) from the Orange County Chapter won the Thomas Edison award for her Type 1 Talk Presentation
- Jim Caleca of the Metro Detroit/SE Michigan Chapter received the Team Builder award
- Rookie of the Year award winners, Stacey Warnick from the Utah Chapter and Rosemary Fuller of the Eastern PA chapter
- Advocate of the Year, Mary Horn of the Greater Iowa Chapter
- Laura Chisholm of the Kansas City Chapter received the At Home on the Hill Award
- Lifetime Achievement Award went to Gary Henn of the Central New Jersey Chapter
I was surprised and honored to have received the Thomas Edison Award, but was feeling sad that my daughter-in-law Julie was not there to share it with me! Without her help and inspiration our Type 1 Talk at the Original Fish Company in Los Alamitos, would never have happenedl. Nor would it have been so successful without Wendi and Vanessa who made it all possible!
I also have to mention that sitting at the table next to me was a group of very enthusiastic young men and women who, I could see, were texting throughout the entire awards presentation!! At the conclusion of the presentation, several of them came over to congratulate Laurie and I and introduce themselves. That’s when and how this whole blogging thing all began!! They were a group of 9 people representing the Diabetes Online Community (DOC) that had been invited to share their stories and educate us on the impact the online community has in the support of all of those living with diabetes! As one of the oldest advocates in attendance, I could not let all these youngsters pass me by!! And so it began…Laurie and Scott promised to get me started and here I am!!